I love everything about this. Teddy's clearly loving his delivery gig. |
Teddy's Triumphs and Trials
This is our family's journey with the rare PIGN genetic disorder Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. When our son was diagnosed in November 2015, we were told he was the 15th documented case in the world. We've discovered more affected individuals since, but it's still an extremely rare and unknown condition since its discovery in 2011. Our hope is to create awareness of the disorder and foster a sense of community among those affected by the disorder.
Saturday, January 11, 2025
Middle School
Sunday, December 15, 2024
A Break Due to Heartbreak
Friday, September 6, 2024
Right on Track
We've reached the end of the first week of middle school, and we're right on track.
Quite literally, actually.
We spent several months this summer working with our local school district regarding Teddy's use of a GPS tracker at school. We had to navigate privacy and security concerns (for other students) as well as district policies. We worked with his tracking device company's school liaison educators to ensure our district understands the capabilities of his tracker and why it's best for Teddy.
It took until an IEP a week before school started, but we reached consensus on how to best support Teddy. We're really happy with the solution as we feel it's best for Teddy to ensure his safety. It's also, hopefully, an opportunity to work toward changing district policy to allow other families to use similar devices.
At any rate, it allows us to know exactly where Teddy is, ensure he makes it to school, to his after-school program and track him should he elope from school ... not that he's ever done that before ... oh wait ... that's a good story.
Gosh, I love these two goofs! |
While he does have his older brother at school to advocate and look out for him, AJ has yet to see Teddy at school because their paths don't cross. But several of AJ's friends have said hi to Teddy in the halls, and he has gym with one of the neighbor girls, which he thinks is the coolest thing. (He doesn't care that she's a mature 8th grader, and he's only a 6th grader ... he'll still hang with her.)
Monday, September 2, 2024
Middle School - Here We Come!
Be still my heart! This was when Teddy could barely walk. |
- He's at the same school as AJ, for better or worse. I love that AJ will look out for him, as will our neighbor girls and hopefully AJ's friends.
- Teddy is a social butterfly. He'll make friends incredibly fast and will quickly endear his teachers, paras and make himself known to all the adults in the school.
- Teddy gets support to attend gym with a whole bunch of his peers, modified with the support of his adapted PE teachers. I think he'll love that overall.
- Teen life aka home ec. is a modified class for Teddy and a handful of his peers. He is going to absolutely love even the laundry aspect but especially the kitchen skills. This teacher also is amazing (AJ loved her class!) and does a coffee cart with Ted's class. I can only imagine how excited he will be to participate in this learning opportunity.
- Band is one of Teddy's classes. We had to select band, choir or orchestra as one is required for all 6th graders. I said I wouldn't trust him anywhere near the string instruments, so that ruled out orchestra, and he's non-verbal, which meant choir wasn't a great fit. So band it is! AJ also does band and loves it and the teacher! So it'll be really interesting for the poor teacher to have a great student like AJ and then Teddy. His para will get a workout in band, no doubt, but I think he'll love all the music and be so proud to participate with his peers.
They've gotten a bit bigger in the past 8 years. |
Monday, August 19, 2024
A Hiking We Will Go!
A beautiful scenic overlook (up the side of a Wisconsin mountain). |
Wednesday, July 24, 2024
Happy Birthday Buddy!
How is it possible that my little guy is 11?!?
He's not so little any more ...
Teddy's birthday is often a mix of emotions:
- Gratitude to have another year with Teddy. When we got his diagnosis at 2.5 years old, we read the life expectancy was 3 years old. Given that there are only about 100 known cases of PIGN-CDG in the world, we know far too many families who've buried their children from this diagnosis. Yet Teddy and others continue to thrive and write their own stories.
- Sadness that comes with comparison. In the words of Teddy's namesake, "Comparison is the thief of joy." Some years it's easy to get lost in the rabbit hole of what Teddy can't do compared to others his age. It's especially easy when shopping for gifts is hard.
- Happiness of the celebration with family and friends. The best thing for Teddy isn't presents, but rather the presence of his favorite people.
We're so blessed to have Teddy as our son and blessed beyond measure to have the community that surrounds and loves on him!
Sunday, July 21, 2024
Summer Sickness
It's weird how things work out sometimes.
Just a bit of mud. |